The True Story of 40mg Dex Steroids!

Hello 10.16.16

Finally…the crash fog is lifting. I can breathe again. I can feel some relief. I don’t ache as much. I can feel hope again. I’m finally (somewhat) ok in my own skin. I have “perspective” again. The frustration, anger, sadness and overwhelming sense of defeat is disappearing. It’s been 5 bi-polar crazy making days of steroid up up up and down down down.

These mysterious, cancer gobbling Dexamethasone Steroids make me feel so temporarily, momentarily wonderful, “high”, “buzzed” and “well”. There’s an amazing physiological and psychological energizing rush and boost that happens, with an amazing sense of being ok, being well, being who I used to be, being capable of “anything” again. Steroids give me pretend super powers.

Then it happens… the crash fog rolls in. The unbearable, awful, stifling, suffocating crash creeps in, engulfing my entire being, strangling me in an undefinable yuckiness. It’s not instantaneous. It creeps in rather slowly, hour by hour, dragging me further down the tunnel of misery, ripping away the surreal “helium high”. It rolls in throughout my body, permeating my being, physically, psychologically, dragging me into a pit of gloom and misery for days.

Tuesday, (6 days ago), I slammed back 40mg of Dexamethasone steroids with a Vanilla Ensure. That’s 10 little 4mg pills. They look so benign and insignificant. 10 little mint green pills that will get in my body and start telling myeloma to skedaddle the hello out of my body. 10 little miraculous pills that do so much good, yet eventually wreak havoc with me. 10 x 4 = 40. That’s “high dose” in the myeloma world. Haven’t done that since January 2010, and I don’t know how long I will be doing this level. To infinity? For 3 weeks, it’s 20mg + 20mg on Kyprolis infusion days. For one week, 40mg at one pop, on my Kyprolis off week… which used to be my “break week”. No more breaks. No more “break week”. Continuous, continual treatment… forward march to infinity. 

I take these lovely little mint green pills when I wake up. Some wake up extra early to get a jump start on the crazy-making side effects, so sleep won’t be entirely elusive later on. Me, after almost 7 years now, I’ve learned to not change my life too much to accommodate myeloma. “F you myeloma”, I say to myself as I swallow those 10 little pills. “F you cancer”. So whenever I wake up and get my day started, I take those 10 little magical monsters. As I swallow them, I know all too well what’s to come in the next several hours and days. I know the crazy bi polar extremities awaiting me. But I do what I have to do, to survive.

Several hours later I begin to feel a wonderful sense of “everything’s going to be ok”! My body doesn’t ache as much, my spirits are lifted, I’m feeling more energized, happy and hungry! I feel hope.

Several more hours later, the euphoria increases. I want to “do something”, accomplish something, get somewhere, do all the things myeloma, chemo, side effects and fatigue have prevented me from doing. I’m hungrier. Roar! I feel light and full of life. I breathe deep and almost forget I have cancer. I’m beginning to feel “alive”.

Thank you for the awesome picture Dr Dianne!

Several more hours later, I’m bouncing off the walls. Roar! Most everything is funny. Life is going to be ok. I’m going to be ok. I want to scream to the world, that I’ll be ok, Julie is coming back! Let’s party! Let’s do something. Let’s go somewhere. Help me make up for lost time! Play with me, laugh with me, fly with me, run with me, scream with me. Maybe I don’t have to take disability retirement after all I ponder.

Here I am, lower right corner lol, DexaMETH lab ;)

Several more hours later I want to eat the entire grocery store or restaurant menu. I want to do even more things: play, laugh, clean, straighten up, do chores, work, organize, drive, ride, walk, run, play, laugh, scream, write stories, tell stories, plan events, go into my office, help students, help people, save the world, eat good food and not so good food. I want to do everything. I dream of riding my horses, going on trips, hiking, riding, lake sports, skiing, running in nature, yelling to the world, “I’ll be fine!” “I’m winning”! I feel like I can accomplish anything. My power is back. Julie is back, world! Watch out, get on my bus, or get out of the way! Everyone and everything is funny, joyous, happy, accomplishable. I talk louder and don’t care. It feels great to feel so alive! 

Several more hours later I know I have to wind down to eventually sleep. But eh, who cares. I don’t want this euphoria and bliss to end. I want to accomplish, laugh, play, enjoy life while I can. I love feeling somewhat ok. It’s unbelievable to me. I want to dance, run, scream, skip, hike, do things! And I want to eat everything in sight. Sometimes I do, sometimes I control myself. Mint green ice cream matches the theme of those sweet little mint green killer steroid pills. I love having energy. I want to be me again. I temper myself and control my cravings. Mind over matter. It’s late at night. The moon is shimmering through my window. I feel so alive, I feel so me again.

I submit and give in. I drink chamomile tea. I take Melatonin or Benadryl. I try to find funny things to watch on TV, or read or just peruse online. I’m energized and positive. I’m often up late enough to hear the hoot owls hooting. The moon, the owls, the night birds. I feel so alive! I’ve learned to love the late nights, new mornings. It’s so peaceful to me. Everyone and everything is calm, resting, relaxing… while my mind is spinning out of control, in a good way. I force myself to bed, regretful that I’ll “waste” my buzz on restless sleep. 

Morning brings exhaustion, but I still feel ok. I know the crash is looming, but I’m still somewhat ok. My face is flushed and my body is buzzing and I have a headache. I hydrate a lot, or try to. I control my eating. I plan all kinds of things in my head, but I know my helium will soon be dissipating. The mental restlessness begins. I’m edgy, ready to pounce. 

24 hours after 40mg of steroids I think I can still do all kinds of things. But as the hours pass and the day moves forward, my illness reality begins to return. Whomever I’ve said I might be able to meet up with, I cancel. Whatever project I thought I could accomplish, becomes a labored chore. I push forward. I force myself to be ok. I force myself to do things around my house and property. I feel worse each hour. I'm waning and I know it. I’m frustrated and resentful.

36 hours after 40mg of steroids, my body is swelling. I have a headache. My stomach hurts a bit, but I know “food is my friend” in terms of the acid steroids create. I crave spicey and salty. I know I will regret salsa and chips, but I don’t care. I force myself to do chores around my house, around the property. I need to move, but I don’t feel like it. 

I’m waning more as the evening comes. I don’t want to talk. I’m short tempered. Everything begins to bother me. Things that were in invigorating and inspiring yesterday, are annoying today. Everyone and everything becomes annoying. I annoy myself. I question everything now. My positivity turns into negativity. I control myself physically and psychologically so I don’t become the monster I feel brewing inside of me. I bite my tongue. Optimism Julie, optimism! 

Thursday brings exhaustion, extreme fatigue. Sleep is restless, yet I’m desperate for sleep. I sleep wake up, sleep wake up, sleep wake up. I finally get up. Yuk, I feel gross. Nauseated, dehydrated, achy, headachy, swollen, grumpy, pissy, short tempered, negative, sad, depressed, frustrated, why me, how come, what happened. Nothing tastes good. Metal mouth. I force myself to eat and drink. Ugh, I hate my life. What’s the purpose I wonder? There’s no end to this endless treatment road. Why, what’s the point. Negative thoughts dominate my thinking. I stuff it. I counsel the counselor. I’m grumpy, achy, nauseated, bloated, frustrated, sad, angry, pissed off. Exhausted. Want to do so much and can’t. Illness controls me. Medications and side effects control me. Everything controls my life but me. Everything’s upside down. Not supposed to be this way. My stomach hurts, my legs hurt, my back hurts, my ribs hurt, my head hurts. Everything hurts inside and out. 

I fake everything. I try to be ok. I try to be pleasant to those around me. I stuff it. I fake it. I suppress it. I hate you myeloma and what you have done to me. I am a stranger in my own body. Not fair. Not fair. Not fair. What did I do to deserve this? 

So tired. So exhausted. Need sleep. Can’t sleep. Then I do sleep. 

It’s Friday now. I not a happy camper. I’m exhausted, sad, frustrated, angry, bewildered, achy, yucky, nauseated. I don’t like my life. I don’t like that I don’t like my life. I’m Julie the Optimist, glass always half full. What happened? I fake being ok. I don’t want to burden those around me. I always pull it together. But I’m also honest if someone asks. I also let everyone around know they’re close to getting punched if they push my buttons. I’ve never punched anyone and I never would! It just sounds good to say. I always say it with a smile. 

My family tries to cheer me up. We talk about all the things I want to do on GOOD DAYS. Ha! I don’t really have many of those any more. Myeloma stole those. Treatments stole my break week. Fatigue stole my life. I resign myself to feeling lousy 5 days a week. That’s my reality.

It’s like being engulfed in a strangling sense of undefinable gloom and doom, pain, anxiousness, physical malaise, and days of having little control over my body and how I feel. I muse how it’s so crazy how the body can go from exhilaration to funk in just a matter of hours. I give in, I know I don’t have a choice. I’m spiraling down Alice’s rabbit hole. 

Scott trying to cheer me up with a silly selfie

I’ve planned and canceled multiple things. I thought about doing so many things on my many mental lists. Too fatigued, too tired, too grumpy, too overall yucky. I apologize to everyone for everything. I apologize to friends that want to see me, but I can’t. I apologize to everyone I have to cancel on. I drag myself outside to help Jim with the animal chores. I love my animals, but chores feel like an overwhelming chore now. But seeing all my animals and knowing how they need us, lifts my spirits.

I constantly, continually tell myself how fortunate, blessed, lucky, I am. Things could be so much worse… I am always reprimanding myself for any negativity I feel, as I have so much to be grateful for. Shut your trap Julie. Suck it up Julie. You’re here. Many are not. You’ve got so many things in your favor. Be grateful. You are one of the Lucky Ones… shut up Julie, shut up stupid steroids turning me into a negative, angry, frustrated witch.

The rooster crows, the hens cackle, the horses nicker, the birdies chirp, the kitties meow, the doggies beg for petting and love. All these faces need me. They help ground me in reality. My family worries about me and feel helpless that they can’t make it all better… I am frustrated with everything and everyone. I feel so powerless. I am a yucky feeling, dysfunctional blob. My head hurts, my mind is sad, my body is achy, I feel worthless, useless and wonder why about everything. I reprimand myself. Get a grip Julie. It’s day 4 of 40mg of steroids. Haven’t done this dose since 2010, I remind myself. Shut up Julie. Back then, you did 40mg DAILY, for 4 days on, 4 days off. Just shut up Julie and be grateful for myeloma numbers half now, what they were at diagnosis 12.30.2009

Saturday… late afternoon… slowly, all of a sudden, the fog begins lifting. Slowly, then suddenly I feel a bit better. My skin isn’t crawling, my stomach doesn’t hurt as much, the acid reflux has disappeared, as is my headache. Slowly the swelling and bloated feeling is lessening. Exhaustion and extreme fatigue is lessening. The sun is shining again. Positivity is coming back. I feel hope. I feel a bit more like me. I like my life again. 

Welcome to my 40mg of Dexamethasone steroids weekly now. To infinity and beyond. Whether it’s 20mg + 20mg 2x per week on Kyprolis infusion days, 3 weeks per month, or pounding 40mg at one swallow, I do what I have to do, to not let myeloma win. 

PS- I'll find out my lab results tomorrow, 10.17.16
Let's see how this new regimen of 40mg Dex is pummeling myeloma! Check back, and I'll update my numbers here after my Dr appt and chemo infusion... and of course, cheers to roids all over again Monday and Tuesday to infinity.

UPDATE: 10.18.16
Good News- (well somewhat):
IgA down from 2110 to 2050! Only 60 points, but I'll take the downward direction!
M Protein down from 2.19 to 1.96! Only .23, but I'll take the downward direction!  
These are still pretty high numbers...

IgA is 5x the high end of normal range of 70-400 
M Protein normal/remission range is zero 
Neither level is anywhere near normal...


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